The Epilepsy Foundation Middle and West Tennessee makes great efforts to ensure that clients have information about local, state and national laws and pending legislation that affect them.
Patient Protection Act: Tennessee state law that went into effect July 1, 2007
For some people with epilepsy, identifying the right medication(s) and the specific dosage for good seizure control may take months or even years. Once control is established, any change or subtle difference in the medication can result in breakthrough seizures, with the potential for catastrophic results. EFMWT sponsored a resolution, which was passed by the Tennessee General Assembly on May 11, 2006, affirming the importance of public safety protection for people with epilepsy regarding uninformed substitution of their anti-epileptic medication. In 2007, the Patient Protection Act was introduced in the state legislature to further protect people with epilepsy. The act stated that a pharmacist may not interchange an anti-epileptic drug, brand or generic, or manufacturer for manufacturer, without first notifying the patient and prescribing physician. The bill passed the Senate unanimously and the House with only one dissenting vote. The act became law and went into effect July 1, 2007. Postcards outlining the law were sent to 1,606 pharmacies in Tennessee in June 2007. Our goal is to ensure that clients, pharmacies, and physicians are well-informed of the law during this next year.
Diastat Bill: Tennessee state law that went into effect July 1, 2008
Federal and state laws guarantee every child the right to participate in free, appropriate public education in the least restrictive setting, and provide for administration of medicine, as needed, to students with disabilities. The purpose of these laws is to ensure that children with chronic health conditions like epilepsy can receive education and participate in activities with their peers. When a child with epilepsy is susceptible to prolonged or cluster seizures that can cause serious injury and even death, his/her doctor may prescribe Diastat (rectally administered diazepam designed for use by non-medical caregivers) to be administered on an emergency basis. Unfortunately, in many Tennessee public schools, there are times when a school nurse is not available. The Diastat Bill proposed that in any school where a child with epilepsy has been prescribed Diastat, two volunteers may be trained to administer the Diastat in the event of an emergency when the school nurse is unavailable. The bill passed both houses unopposed. Letters to school principals and nurses are planned for the 2008 school year informing them of this important law.
Self-Advocacy
The staff of EFMWT strives to help our clients recognize their own strengths and to understand how they can become their own best advocate, including preparing our clients so that they have the confidence to speak for themselves. When a parent needs support at his/her child’s Individual Education Plan (IEP) meeting to discuss side effects of medication or the effect of uncontrolled seizures on their child’s education, EFMWT will accompany them. EFMWT encourages self-advocacy and currently sponsors three Support Training Exceptional Parents (STEP) workshops a year to prepare and assist parents in their efforts to obtain optimal educational services for their children. We actively support the Tennessee Health Care Campaign in advocating for insurance and health care for all Tennesseans. Furthermore, for a number of years, EFMWT has taken volunteers to the Epilepsy Foundation of America’s Public Policy Institute and Kids Speak Up! in Washington, D.C. to generate grass roots support.
Pending Federal Legislation: ADA Restoration Act of 2007
Over the past 18 years, the courts have narrowed the definition of disability so much that people with epilepsy and other conditions who manage their disabilities with medication or other forms of treatment are viewed as “too functional” to have a disability. While these same people may be denied a job or fired because an employer mistakenly believes they cannot perform the job, they are still denied the ADA’s protection from employment discrimination. In 2007, the ADA Restoration Act was brought forward to return the protection the ADA originally provided: to prevent wrongful and unlawful discrimination to all people with disabilities. In June 2008, the ADA Amendment Act of 2008 passed the House by an overwhelming margin, and now moves to the Senate. People with epilepsy and their families should contact their senators to encourage support of this bill in order to secure the promise of the ADA, as it was originally envisioned.
If you have any questions about these bills or would like more information about how you can contact your legislators and express your support on pending legislation, please contact the Epilepsy Foundation at (615) 269-7091 or (800) 244-0768.